Tag: disability

I’m very fortunate to publish both this written blog and a YouTube video Vlog every week. The content has never overlapped until now, so I saw it fitting this week to post a video as both my blog and Vlog – on a poignant topic that, unfortunately, many of us can relate to….

Among the most difficult clinical mental conditions to diagnose is delusional disorder. The reason why it’s so difficult to clinically diagnosis is because it doesn’t manifest itself as other conditions do. There are no hallucinations, you don’t hear voices, and you remain content, sensible, and logical. The question, then is, where is the disorder?

This is the tricky part. Clinically speaking, extreme forms of jealousy or grandiose thoughts are emblematic of delusional disorder. However, it still becomes tough to diagnose, doesn’t it? Most of us have felt unfounded jealousy in our lives at some point if we’re honest, and grandiose thoughts often fuel success. In this way, it’s only to the very extremes that this state of mind becomes diagnosable.

I might be among the few who are diagnosable. See, I believe that I control my own joy, which goes against the way we culturally define what creates joy. We typically base joy on external forces bringing “good” into our lives. We logically don’t feel joy during adversity. Yet, in my possible delusional disorder, I often find joy even during the toughest times of my life.
Among the gravest moments I’ve experienced was awaking with a tracheotomy, on a ventilator, unable to speak, due to respiratory failure following a surgery. To make all worse, my cerebral palsy doesn’t allow me to physically write. I was suddenly locked inside my body with virtually no ability to communicate.

As the days passed, I found the circumstance both horrifying and hilarious. On the one hand, I couldn’t communicate beyond gestures, which is a disturbing reality. You feel as though you’ve lost everything. On the other hand, seeing my family try to read my lips with little avail was a funny sight to witness. As a result, I mouthed the most obnoxious phrases, and amused myself to no end as they tried to figure out what I said. My sister was the most fun to toy with. She shares my sense of humor and joy, and she laughed hysterically at not being able to understand me and I laughed at her for not knowing the ridiculous words I was secretly uttering. It was the two of us in my hospital room, laughing hysterically during a very serious health crisis. But, there we were, finding joy.

After a week or so, it was time to learn to speak with my trach. There’s a small cap that goes on and it allows vocalization. As the speech therapist explained to my family and me, it takes days or weeks to master speaking with a trach, that I couldn’t expect to speak right away.

With the cap in place, surrounded by family, nurses, and the speech therapist, I had an audience. I took a deep breath and uttered the first words that came to heart: Hello, I’m Johnny Cash. The words came out deep and clear.

It was the way Johnny Cash began every concert and nothing seemed more fitting or joyful for me to say in the moment, per my possibly delusional mind.

Everyone expressed a combination of tears and laughter. I didn’t plan on speaking those words as my first, but the silliness and joy just came out.

I’ve found myself in such situations throughout my life, and as those around me will tell you, joy remains. I’ve had my frustrated times and dark days, of course. But, in general I live with a sense of joy, one that nothing can take from me. You can take my voice, but not my joy!

I suppose we could debate whether I have diagnosable delusional disorder. What I know I have is a specific perspective toward our emotions. We have two choices in the face of any adversity: we can allow it to pull us down or we can choose not to allow it to steal our joy. I strive to default to joy.

I say that if being joyful even during the tough stuff is delusional disorder, we should all be fortunate to have such a condition.

When we face tragedy, trauma, or adversity, the question that many default to is, Why me?

While it’s an understandable initial response – after all, no one wants to experience life’s toughest times – there’s no way to answer that question.

Or, is there?

What I’ve witnessed time and time again in life is that the answer to Why me? is a straightforward one: Because you’re being equipped and prepared for the unforeseen to come.

At my birth, I wasn’t breathing, my body in life-threatening distress. I entered this life in a traumatic state and survived. That set into motion a life of cerebral palsy, which brought its own challenges. However, no one could have fathomed just what I was being equipped and prepared for.

See, some four decades later, I once again wasn’t breathing, once again fighting for my life. An intubation tube from which I was breathing during a surgery kinked in my airway, cutting off my air supply. An emergency tracheotomy was performed, allowing me to breathe – a harrowing eight-minute battle to save my life, I was later told.

I awoke in a different world – on a ventilator, unable to speak, my body far beyond my control, all in distress, just hanging on for life.

Over the following weeks, it took all I had to survive. Yet, there was an intrinsic familiarity to it all. There was a strength that I can now look back upon and contextualize. My body was in a place it had been before. I was long ago equipped and prepared to handle this.

Fortunately, most haven’t battled for life twice in such an uncanny way. But, we can all look back on any number of circumstances in our lives and connect the dots as to how they equipped and prepared us for future vying and victory. Maybe it was a job loss where it seemed like your world collapsed in an instant, but you went on to a better job, with a new understanding that you could come back from a seeming career setback even stronger. Perhaps it was an excruciatingly painful breakup from a relationship, from which you felt your heart would never recover, but you grew to understand what you truly wanted in a relationship and went on to find the love of your life. The list goes on. However, it all ties into the perspective that nothing happens to us, but for us. No, we usually don’t see the reasoning behind it in the midst of crisis, but it eventually reveals itself.

What have you struggled with or are struggling with? Could it be that you’re being equipped and prepared to be great when it matters most, that there is a reason behind it?

Indeed, there is. Let us shift from asking Why me? in times of adversity and take comfort in knowing that we are being equipped and prepared for whatever life has in store. Let us recognize that our seemingly weakest moments actually fortify us in ways that aren’t otherwise possible – we are stronger because of it. We are equipped and prepared!

While writing a medical article about amyotrophic lateral sclerosis (ALS), I was intrigued by the story of Lou Gehrig. Although “Lou Gehrig’s disease” is a synonym for ALS, little is discussed in literature in a linear form about how the most famous person with ALS actually dealt with the condition. In extracting parts of Gehrig’s experience from many sources, bit by bit, I saw an amazing story unfold, one with a profound lesson for many of us.

In 1923, Lou Gehrig joined the New York Yankees, soon taking his spot as first baseman. By the 1930s, he set an all-time record, playing in 2,130 consecutive games, a record unbroken by another player until 1995. In the 1930s, Gehrig, alongside longtime teammate, Babe Ruth, became a homerun champion, as well. However, in 1938 everything changed for the baseball legend.

In the 1938 season, Gehrig had his first seasonal slump. Based on the 1937 season, he was still going strong, even in his mid-30s, but his performance was suddenly amiss. What’s more, Gehrig felt it was more than just an unlucky season. He struggled not only on the field, but with tasks as simple as tying his shoes.

By April of 1939, during spring training, even the press became concerned. Sports journalist, James Kahn, wrote:

I think there is something wrong with [Gehrig]. Physically wrong, I mean. I don’t know what it is, but I am satisfied that it goes far beyond his ball-playing. I have seen ballplayers ‘go’ overnight, as Gehrig seems to have done. But they were simply washed up as ballplayers. It’s something deeper than that in this case, though. I have watched him very closely and this is what I have seen: I have seen him time a ball perfectly, swing on it as hard as he can, meet it squarely—and drive a soft, looping fly over the infield. In other words, for some reason that I do not know, his old power isn’t there… He is meeting the ball, time after time, and it isn’t going anywhere.

On May 2, 1939, Gehrig ended his consecutive-games record by pulling himself from the lineup. Six weeks later, on June 13, he checked into the Mayo Clinic, where he was diagnosed in the following days with ALS, a degenerative muscle disease, fatal within two to five years. He was 36.

Although contrary to the actual diagnosis given, Gehrig’s initial reaction was expressed in a letter to his wife: “There is a 50–50 chance of keeping me as I am. I may need a cane in 10 or 15 years. Playing is out of the question.”

On July 4, 1939, with the news of Gehrig’s illness filling newspapers, he returned to Yankee Stadium to retire, giving his “luckiest man alive” speech. There’s little record of the speech, but the following pieced-together excerpt shows Gehrig’s disposition:

For the past two weeks you’ve been reading about a bad break. Today I consider myself the luckiest man on the face of the earth…. When you look around, wouldn’t you consider it a privilege to associate yourself with such fine-looking men as are standing in uniform in this ballpark today? …I might have been given a bad break, but I’ve got an awful lot to live for. Thank you.

One might think that upon retirement from baseball, with such a grim health prognosis, Gehrig would have settled into a quiet life. However, in keeping with his show-up-and-play nature, he took a civics job as a New York Parole Commissioner in January, 1940, maintaining a very low profile as he worked with prison inmates, where he believed in rehabilitation.

By 1941, while Gehrig worked as a Parole Commissioner, his condition dramatically declined. His wife, Eleanor, was his constant companion, helping him perform his duties. In May of 1941, Gehrig resigned his position due to ever-deteriorating health.

On June 2, 1941, Lou Gehrig died of ALS at 10:10 p.m., at his home in the Bronx.

While many remember Gehrig for his Hall of Fame baseball accomplishments, his ultimate legacy may be a single quote that he left us with that applies so well to all facing such harrowing adversity: “Don’t think I am depressed or pessimistic about my condition at present. …I intend to hold on as long as possible and then if the inevitable comes, I will accept it philosophically and hope for the best. That’s all we can do.”

Words are just that – words. While they have formal definitions, the way we interpret and experience words vary greatly. Trust and intimacy are two such words that, despite formal definition, have dramatically different connotations and practices in our relationships.

On the surface, most see trust in a relationship as intertwined with commitment, meaning your partner isn’t going to betray you. Similarly, intimacy generally means closeness, both emotionally and physically. However, while most couples have built relationships on these core principles for countless generations, the scope of what trust and intimacy mean within relationships is dramatically changing in our culture as we speak.

See, baby boomers, born between 1946 and 1964, are now between 53 and 71, to the tune of 76 million, the largest aging population in US history. Of course, there are a lot of aspects to the baby boomer aging population, but one that is especially intriguing is the shift couples are having to make when it comes to trust and intimacy. I’m not a baby boomer myself, but as a married man with a disability, I have an understanding of what many aging couples are facing, where trust and intimacy are taking on deeper, more complex meanings within relationships based on changing abilities.

The reality is, while baby boomers are demonstrating living longer than their parents’ generation, it means facing such realities as later-in-life illnesses and debilitating medical conditions. As a result, couples are finding themselves in the circumstance of one spouse caring for the other – and it’s a complex transition. Trust and intimacy, then, become a whole different experience from what a couple once knew.

In many situations, the individual needing caregiving must trust enough to feel safe in sharing vulnerabilities with his or her spouse – and that can be a harrowing leap of faith. It may have been that trust was once about fidelity or finances, whereas now it’s about your spouse helping you use the commode or bathe. That’s a big leap in trust for many. Similarly, the caregiving spouse must trust that his or her spouse is comfortable in receiving help.

On the intimacy side, it can likewise be a difficult transition. Imagine being a modest person, where your spouse must now assist you in very private living skills, such as bathing. Intimacy takes on a whole new meaning. It requires a deep understanding of each other’s emotions given the circumstance, and that can be tricky.

Interestingly, when couples are able to expand their scopes of trust and intimacy to include illness, disability, and caregiving, it can bring them ultimately closer together. The key I’ve witnessed, though, is that long-standing routines of life must remain in order to keep perspective and romance within the relationship. And, depending on the circumstance, that can be hard to do (and sometimes impossible). My wife helps me considerably in the mornings and eves, but the bulk of our life is that of a 40-something couple with children moving through life. In our case, while my disability and her caregiving aren’t the ideal, we have evolved and expanded our scope of trust and intimacy, and it adds to our unity as a couple. Put simply, we’ve learned what we can work through together – and that’s empowering to all aspects of our marriage.

Such circumstances are an increasing part of relationships within our culture as it ages, and I hope couples are able to navigate these new waters in ways that expand trust and intimacy rather than erode it. Life is about change and growth – and fortunate couples evolve together, regardless of what life sends their way.

When I was six, my great-grandmother told me that if I stopped being lazy and simply walked like my brother, she’d buy me a bike. She wholeheartedly believed until the day she died that my cerebral palsy was a farce – I was merely the laziest person she’d ever known. I was a lifelong disappointment to her.

Over four decades later, I have empathy for my great-grandmother, knowing that her outlook was likely a defense mechanism toward dealing with my having a severe disability, a painful reality for most family members in such situations. However, throughout my childhood, she took every opportunity to tell me how my lazy behavior of having cerebral palsy disappointed her.

Growing up, I saw my great-grandmother as a crazy old lady who was on her own when it came to her outlandish opinion of my cerebral palsy as pure laziness on my part. I, in fact, knew that I was making the most out of what I had – and I was fine with the reality that I disappointed her. She had her opinion; I knew my reality; and, I was fine with it all.

What I didn’t realize till in my adulthood was that she simultaniously taught me a great lesson while instilling in me a value that would fuel much of my positive outlook in life: as long as I do my best, others can love or hate me, but the outcome doesn’t change. My job is not to worry about what others think, but to be the best me – and let the chips fall where they may.

Interestingly, it’s proved true in my professional life. Some value what I do – right down to this very essay – while others despise it and me. Both views of me are great – and have no affect on what I do (even if you offer to buy me a bike!).

My great-grandmother taught me an even larger lesson, though: it’s likewise no one’s job to try to please me; rather, my only role is to support others in who they are. I’ve found this invaluable as a father, husband, friend, and colleague. As long as those around me are happy and healthy, living to whatever their personal bests are, I’m thrilled for them. My role is to support, embrace, and love, not judge.

In these ways, just as our job isn’t to please everyone – because that’s impossibe – it’s not our place to want others to please us. By living to this reciprocating standard, we find ourselves in life-inspiring, mutually-embracing relationships of ultimate acceptance. The downside is, no one buys us a bike….

In memory of Dr. Brett Weber, who lived every day like it was Saint Patrick’s Day (except for the beer!)

By Mark E. Smith

Mahatma Gandhi said, “Live as if you were to die tomorrow. Learn as though you will live forever.”

If today were your last day on Earth, what would you do? The more profound question is, are you doing it?

In my forever learning, I’ve taken to heart both the fragility and power of life. In being a member of and serving those with disabilities, I’ve known many passings. I’ve watched friends die of MS after the span of a decade or more. I’ve had friends with ALS who’ve only lived three years from diagnosis. And, I’ve had friends with quadriplegia who simply didn’t wake up one morning. Even when there seems to be a predictability to death – as with a terminal condition – there’s not. Anyone of us can die at any time, disability, illness or otherwise. And, we do.

Having known so many who have passed away, it’s made me oddly at ease with death. It literally has long been part of my life, just as it’s a part of life, itself. This isn’t to say I’m not heartbroken with each passing, but I’ve learned not to struggle with the reality of death. Grief for me has become less about sadness and more about fond remembrance. My life has been changed by knowing all who have passed, and their wonderful impact on me has never stopped at their passings – it’s carried on with me.

And, there within resides among my greatest life lessons: honor the fragility and power of life, as Gandhi put it, as if we may die tomorrow. What does that really mean, though?

Living as if you were to die tomorrow means deeply recognizing the power in life we all have. For each of us, priorities are a little different, but there are universal truths. Deeply value and express gratitude to those around us by constantly reaching out to our loved ones, friends and strangers alike. Live our dreams now, rather than putting them off. Find beauty and meaning in as many moments as we can, even in the difficult or mundane. Accept what we can’t change, and move on. Have fun! And, as my wise wife puts it, “Every day, do important things.” Life is what we make it, so why not live to a degree that doesn’t just bring joy and meaning into our lives, but to everyone around us?

As for me, I’m not worried about living or dying tomorrow – I’m fine with either fate. I’m just relishing every moment of today. No matter if it’s rain or shine, I’m using my power wheelchair to dance in it all!